Piper's blog challenge, cf control and progression

I am writing this blog, in connection with fellow cf'er Piper's blog challenge :) http://amatteroflifeandbreath.blogspot.com/

Cf control and progression, hmmm a difficult subject. I don't feel like I have control over my cf, things will happen, as in life, and I cannot control that. But that said, I can control it in that way, that I stay compliant with my treatments, and I do. I am compliant. I do my treatments morning and nights, and physical thearaphy once on weekdays, and twice on weekends. I like to be in control of things, I don't like the uncertanty, I am the kind of person who likes to know what I am going to do tomorrow, change of plans makes me uneasy. I do feel that my cf in "under control", knowing that things can change any minute, I just don't want them to... One thing in my treatment routine that I feel guilty about, and feel like I should do more of, is the excercise part. I don't excercise as much as I should, I walk about 40 minutes a day, to and from work, and that is pretty much about it. And at a slow pace. My rehabalitation doctor is alway on my case about excercising, encouraging me to do more about it. And I would really like to, and each time when I leave the hospital after my 3 month check up, I intend to do more exercise, I plan walking eventually running. But after a few days my motivation drops, I am not a sporty person, never have been, well I use to like gymnastic in school and have played handball, but let's face it, I am person who likes to be comfortable and relaxed and sports doesn't fit into that description for me. But still I intend to go walking more, my next 3 month apointment is in about a month away, and I want to be able to look my doctor in the eye, and say, yes I have been excercising. Moreover, my ptfs have been 10 percent lower than normal the last couple of times I've been to the hospital, it might be becasue of small recurring infections, which have required oral antibiotics, or that I have gained some kilos (I am pancriatis sufficient-very sufficinent) so gaining weight has NEVER been a problem for me. I would like to lose some, and being a bit "round around the corners" might be contributing to the decrease in pft, I don't know, but I know I would feel better with a bit less weight, and excercising more.

I was diagnosed late, and have a "mild" case. At first I was very concerned about "progression". I was not sure how to interpret the word. Would I suddenly take a turn for the worse, out of the blue, because "now" I had cf? When/how was it going to happen? I am less worried about that now. I live a "normal" life. I sometimes forget my cf. I see myself as any other person, I was any other person for 32 years. Until my diagnosis. My treatments are just part of my routine, I put on makeup while doing treatments in the mornings, doesn't everyone do this? It feels normal for me. At 18:30 at night I inhale my symbicort and half an hour later I sit down on the sofa, put on the tv and watch a sitcom while doing treatments, doesn't everyone? It's just part of me. When I hear about people stuck in airports or spending the night at a friends place just out of the blue, I wonder, what about their medication, don't they need to do their treatments first? But no, they are not in that group. The cf group. They might be in another group... Back to progression. As things are right now, I don't think about it much, I have to say. I have been ok for the last year. I was admitted to hospital almost a year ago, and have my first pic line and round of IV. That was a moment of truth. I am like the "others", I too do need extra treatment. But right now, knock on wood, things are ok. I have been on oral antibiotic a lot in the last year, almost more on it thatn off it. I have mucus, often ugly green mucus, not much but enough to start a round of oral antibiotics. The summer is also ok this year in Spain, not too hot -one summer a few years back was very warm for me, and I was constantly short of breath and uncomfortable. My sinusus are also ok. I feel like I might have a pholypus (sp?) that needs attention. I get shots of pain from time to time. But for now, things are ok.

Things might change over the years, I expect they will, it would be strange not. But I feel/believe/hope that since I have a "mild" case, my symphoms will be milder, and I will be able to continue with my life. In the pure meaning of the word. I struggle with wether I am a "real" cf'er of just a person, who has a mild cf illnes. I don't know. There are things I can identify with in people who have more severe cases than mine, and thing I cannot. I have not been on oxygene for example, I don't know how that is. I cannot relate. But then there are things like talking about mucus with your family like it's the most natural things of all, comparing colours etc.

When it comes to taking care of yourself and wether you are doing "good" enough, I feel that as long as you do your treatments, exercise(hello Gunhild) and follow a healthy diet, then there is not really more you can do... I stay away from smoke all I can e.g. and I take things slow, when I stress out, busy day at work for example, I feel it in my body, and know I have to slow down. We cannot live our lives in a bubble either, would that be a life worth living? I don't know. Life is precious, we are dealt our hands in life, and we play them as good as we can.